Abstract
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Purpose
This study explored the maternal experiences of providing home care for infants and toddlers with tracheostomies in South Korea.
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Methods
Using a qualitative descriptive design, the study examined the experiences of 10 mothers with children under 36 months who had at least 3 months of home care experience. Semi-structured interviews were conducted between April and August 2024, lasting from 72 to 138 minutes. All interviews were audio-recorded, transcribed verbatim, and analyzed by employing thematic analysis.
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Results
Four main themes were identified: (1) navigating the demands of home care, (2) bearing witness to a constrained childhood, (3) drifting apart through caregiving strain, and (4) learning to carry the weight alone and together. These reflected the mothers’ struggles with inadequate preparation, limited support, financial and emotional strain, along with the gradual development of caregiving expertise through lived experience and peer support, particularly via online.
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Conclusion
Mothers caring for young children with tracheostomies in South Korea faced interrelated systemic, economic, developmental, and psychosocial challenges, while developing a sense of competence and resilience. The findings highlight the need for context-responsive strategies in South Korea, including standardized caregiver education and transitional support, equitable access to essential resources, inclusive childcare opportunities, and integrated psychosocial services. Collectively, these efforts are essential to ensuring safer and more sustainable pediatric tracheostomy care at home.
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Key words: Caregivers; Children with disabilities; Infant; Qualitative research; Tracheostomy
INTRODUCTION
Tracheostomy is a life-sustaining intervention for individuals who require prolonged mechanical ventilation or have conditions that compromise normal breathing [
1]. With advances in pediatric medicine, tracheostomy has become an integral component of long-term respiratory management, particularly for children under 1 year of age who have complex medical conditions [
2-
4]. However, decannulation is uncommon in early childhood, as less than half of these children are decannulated after an average duration of approximately 2 years [
5]. As a result, these children are discharged from hospitals with tracheostomies, leaving parents responsible for providing prolonged and complex tracheostomy care at home over an extended period.
In this study, young children with tracheostomies refers to infants and toddlers who require ongoing tracheostomy care at home, often in the context of chronic or complex medical conditions. While the presence of tracheostomy alone does not indicate severity of illness, it signifies caregiving demands related to airway management, continuous monitoring, and emergency preparedness. Existing qualitative studies on this population include children with diverse diagnoses, reflecting the clinical heterogeneity of this group. In these literatures, caregiving is commonly described in relation to the demands and challenges inherent to tracheostomy status, rather than around differences in underlying diagnoses. Consistently, this study focuses on parents’ experiences of providing tracheostomy care at home across varied medical conditions.
Caregiving for infants and toddlers with tracheostomy involves potentially life-threatening risks, including accidental decannulation, airway obstruction, bleeding, and infection. Because of their smaller airways, young children are particularly vulnerable to such complications [
6]. Although proper caregiver education can prevent many of these adverse outcomes, tracheostomy care remains highly complex and demanding. Parents must learn critical procedures such as suctioning, stoma care, tube replacement, and emergency response techniques [
7]. However, many parents report that the training provided before hospital discharge is inadequate [
8]. Even when comprehensive instruction is provided, parents struggle with gaps in knowledge, lack of confidence, and difficulties in applying learned skills in real-life situations [
9].
In addition to immediate medical risks, tracheostomy in early childhood is associated with developmental challenges. Developmental delays—particularly in gross motor skills—are often evident in young children with tracheostomies. A recent study has found that infants with tracheostomies have significantly lower scores in head control and rolling than their peers without tracheostomies [
10]. Neurodevelopmental impacts have also been reported. For example, children with severe bronchopulmonary dysplasia who underwent tracheostomy demonstrated greater cognitive and motor delays before 24 months of age, with persistent cognitive impairments beyond that period [
11]. Furthermore, the presence of a tracheostomy tube interferes with vocalization and oral communication, potentially impeding speech and language development [
12].
The cumulative demands of prolonged tracheostomy care place a significant burden on parents. In comparison to caregivers of children with other chronic illnesses, such as diabetes or cancer, parents of children with tracheostomies report lower quality of life [
13]. Caregiving responsibilities affect multiple aspects of daily life, including sleep, emotional well-being, interpersonal relationships, and overall family dynamics. Social isolation is also common, as the intensity of ongoing care leaves little time for interaction with others [
14]. High levels of anxiety, depression, and post-traumatic stress have been reported due to the constant vigilance needed to maintain the child’s airway and respond to emergencies [
15]. Nighttime monitoring leads to chronic sleep deprivation and physical exhaustion, while financial strain is intensified by medical expenses and loss of income due to reduced work hours or unemployment for commitment to caregiving [
15].
Although existing studies have examined parental experiences related to pediatric tracheostomy, most were conducted in Western countries. Therefore, less is known about how parents navigate caregiving in different sociocultural and healthcare settings. In South Korea, caregiving for young children with complex medical needs is shaped by cultural norms that may differentiate parents’ experiences from those reported in other countries. Although both mothers and fathers are increasingly involved in childrearing, societal norms continue to assign different roles to each parent, influencing how caregiving responsibilities are assumed within families [
16]. The gendered expectations intersect with a healthcare system that remains hospital-centered, offering limited community-based support for long-term home care. In addition, social perceptions on disability and visible medical devices may contribute to experiences of stigma and constrained interaction [
17]. Collectively, the sociocultural and systemic dimensions influence how pediatric tracheostomy care is provided at home in South Korea and highlight the need for a context-specific investigation.
A qualitative design is therefore appropriate for addressing these gaps, as it allows in-depth examination of how parents manage and interpret caregiving demands within specific sociocultural and healthcare contexts. Accordingly, this study explores the lived experiences and perceived support needs of parents providing home care for infants and toddlers with tracheostomies in South Korea, with the aim of offering insights that can inform family-centered practice and the development of support strategies responsive to caregiving realities.
The research questions of this study are as follows: (1) What challenges and responsibilities do parents of infants and toddlers with tracheostomies encounter in home care? (2) How do parents perceive, navigate, and identify areas of support within the healthcare and social context of South Korea?
METHODS
Ethical statements: This study was approved by the Institutional Review Board (IRB) of Seoul National University (IRB No. 2403/004-006). Informed consent was obtained from all participants.
1. Study Design
This study adopts a qualitative descriptive design with thematic analysis to examine the home care experiences of mothers with young children who have tracheostomies [
18]. To ensure comprehensive and standardized reporting, we followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines [
19].
Participants were recruited between March and August 2024, through an online community for parents of children with chronic illnesses and disabilities. The same recruitment post was sent directly to parents who publicly shared their experiences of tracheostomy care at home on social media. Individuals interested in the study were asked to contact the first author, who then assessed their qualifications based on the study’s inclusion criteria. Eligible participants were parents of children under the age of 36 months with at least 3 months of home care experience. Infancy and toddlerhood represent an intensive and developmentally sensitive caregiving period [
20], and the 3-month minimum ensured that participants had moved beyond the immediate post-discharge state and could meaningfully reflect on their caregiving experience at home [
21]. Parents were excluded if their child had received 6 months or more of hospital or facility-based care within the past year, as this would disrupt the continuity of home-based caregiving. Although the study was open to both mothers and fathers, all individuals who expressed interest in participation were mothers. As a result, the final sample consisted of 10 mothers (
Table 1).
Individual interviews were conducted from April to August 2024, lasting 72 to 138 minutes, with an average duration of approximately 90 minutes. Each participant was interviewed once at a time and location of their preference. During recruitment, attention was paid to variation in participant characteristics—such as the child’s age and duration of tracheostomy care at home—to represent diverse caregiving experiences. Among the 10 participants, eight mothers opted for in-person interviews, while two participated via video calls due to geographic constraints. For in-person interviews, private and secure settings—such as participants’ homes or reserved conference rooms—were selected to ensure confidentiality. Participants received verbal and written explanations of the study and their right to withdraw at any time, and provided voluntary informed consent prior to participation. Given the emotional sensitivity of caregiving experience, participants were allowed to pause, skip questions, or take breaks as needed during the interview, with the interviewer attentive to participants’ response. No interviews were terminated due to emotional distress. Interviews were audio-recorded with participants’ consent, and non-verbal cues (e.g., facial expressions and body language) were documented in detailed field notes. Collected data were stored on a secure device accessible only to the research team.
Semi-structured, open-ended questions were used as a flexible guide to facilitate in-depth exploration of participants’ caregiving experiences (
Table 2), which were followed by more specific discussions [
22]. The interview guide was developed in alignment with the study’s research questions and the clinical context of tracheostomy care at home for infants and toddlers, with domains designed to address practical, emotional, and contextual aspects of caregiving. Data collection and preliminary analysis occurred concurrently, and data saturation was determined after the tenth interview, when no new themes emerged across participants with differing caregiving and clinical characteristics. All interviews were conducted by the first author, a female nurse with several years of clinical experience in a neonatal intensive care unit and formal training in qualitative research, under the supervision of the second author, a professor with expertise in qualitative research. To minimize potential bias related to the first author’s clinical background, reflective notes were maintained during interviews and initial data analysis, and the analytic interpretations were reviewed through regular team discussions.
Each interview was transcribed verbatim immediately after completion, and all personally identifiable information was moved to anonymize transcripts and ensure confidentiality during data analysis. The transcripts were reviewed repeatedly to allow deep immersion and reflection of the data. Thematic analysis was conducted according to the six steps outlined by Braun and Clarke [
23]. During transcription and subsequent review, initial impressions were noted, and meaningful phrases and recurring ideas were identified and labeled with preliminary codes. The first author conducted initial coding of the transcripts, and drafted preliminary themes. The second author reviewed the coded data and thematic interpretations, and theme validation was achieved through iterative discussion and consensus between the two authors. These codes were then organized into overarching themes and sub-themes through discussion to ensure accuracy. Themes were examined, refined, and mapped to represent the dataset, and each was defined and named collaboratively to capture the essence of the data. Finally, a comprehensive report was produced, which integrated the thematic findings with relevant literature to provide context and support the analysis.
The rigor of this study was grounded in the criteria by Sandelowski [
24]. Credibility was established with semi-structured interviews using open-ended questions, immediate transcription by the first author, and continuous team discussions to reduce interpretive bias. Fittingness was enhanced via purposive sampling of participants with diverse caregiving backgrounds, and findings were validated by participant confirmation. To ensure auditability, each research step was thoroughly documented, and participant quotes were included to illustrate the theme development. During translation from Korean to English, careful attention was given to preserve meaning and nuance, with final texts reviewed against the originals for accuracy. Confirmability was reinforced through adherence to the principles of credibility, fittingness, and auditability.
RESULTS
Initial coding of the data yielded 74 descriptive codes. These codes were iteratively reviewed and refined through repeated discussions between the first and second authors, with closely related codes merged into higher-order categories. As a result, four themes and nine corresponding sub-themes were identified: (1) navigating the demands of home care, (2) bearing witness to a constrained childhood, (3) drifting apart through caregiving strain, and (4) learning to carry the weight alone and together (
Table 3).
1) Entering home care without adequate preparation
Participants faced significant gaps in the education provided before hospital discharge, particularly in preparing them for the realities of tracheostomy care at home. Many described the education process as rushed, fragmented, and lacking in practical depth. In some cases, critical information—such as details about necessary medical supplies—were not communicated promptly, exacerbating the caregiver's stress during an already overwhelming transition.
“Caregiver education just seemed like a formality. I wasn’t confident enough, and if something went wrong, it could cost my child's life. Most parents leave the hospital unprepared, and the whole process feels rushed and disorganized. I didn’t even learn about the necessary supplies until 2 days before discharge.” (Participant 5)
The quality and content of caregiver education also varied across healthcare institutions, with notable differences between urban and rural settings. These inconsistencies led to heightened anxiety and uncertainty, especially around managing emergencies such as accidental decannulation. While some urban hospitals provided hands-on training for tracheostomy tube replacement, those in rural areas often offered minimal or no practical instruction.
“Hospitals in rural areas offer little to no caregiver education. They gave a brief demonstration on how to suction using hospital equipment, but provided no guidance on which machines to use at home, how to care for tracheostomy site, or how to handle emergencies, except to call 911. It felt like they were saying, ‘It’s your child, so figure it out yourself.’” (Participant 4)
2) Feeling overwhelmed amid insufficient support
The transition from hospital to home was described as overwhelming and disorienting, particularly in the absence of sufficient post-discharge support. While some participants believed they had a basic understanding of the tasks involved, the reality of independently practicing tracheostomy care exposed significant gaps and challenges.
“I thought I understood everything. But once we got home, I felt completely lost. I ended up calling the hospital multiple times asking for help.” (Participant 7)
Although home nursing is critical for supporting families with complex medical needs especially during the transition period, participants frequently reported receiving little or no guidance on how to access such support. In several cases, mothers were informed that they were ineligible for home nursing without further guidance, leaving them to navigate care options on their own.
“We were simply told our home was outside the service area, so we weren’t eligible for home nursing. It wasn’t until later that I learned we might have been able to apply for home nursing at a nearby hospital with the right documents.” (Participant 1)
In the absence of adequate systemic support, caregivers found themselves taking on the role of advocate to secure necessary services for their child. Several participants noted that, in order to receive timely or appropriate support, they felt compelled to speak up repeatedly and be assertive—sometimes to the point of being labeled as “difficult” by healthcare professionals.
“Some parents feel that they have to be seen as ‘difficult’ or ‘demanding’ just to make sure their child gets proper care. If they don’t speak up and push for what’s needed, it’s the child who ends up suffering the consequences.” (Participant 5)
3) Ongoing challenges with securing the essentials
Basic tracheostomy supplies—such as suction catheters and normal saline—were described as the essentials for daily home care. Despite their necessity, participants reported that a lot of these supplies were not covered by insurance, intensifying the cost-related stress.
“The tracheostomy keeps my son alive, but most essential supplies aren’t covered by insurance. … They’re meant for single use, but I have to reuse them because of the cost. I know it’s unsafe, but I don’t have any other option.” (Participant 3)
In addition to supply costs, participants faced greater economic challenges due to inconsistent insurance coverage and a lack of proactive guidance from professionals. Many of them were unaware of more affordable options or available resources until after making out-of-pocket payments. This lack of timely information, combined with pricing variability across providers, left mothers feeling unsupported and financially strained.
“We had been paying out of pocket for an oxygen concentrator—only to later find out that, with a prescription, we could have received financial support. No one informed us, so we ended up spending the money we didn’t have to.” (Participant 1)
“Some equipment aren’t covered by insurance, so rental costs vary widely. Some companies offer them for free, while others charge extensive amount per month. It all depends on the provider.” (Participant 6)
Caregivers also expressed heightened anxiety about the unpredictable availability of essential supplies, particularly during sudden crises. In these moments, the concern shifted from monetary burden to fear of complete inaccessibility. For many participants, the fear of being unable to obtain life-sustaining products was a source of deep emotional distress.
“During unanticipated events like the coronavirus disease 2019 (COVID-19) pandemic, essential supplies can suddenly become scarce. … Some providers seemed to take advantage of this situation—raising prices or stopping sales altogether, knowing how desperate caregivers and children are.” (Participant 5)
“What worries me most are the things beyond my control—like not being able to get the supplies we need. The cost is one thing, but the thought of not getting them at all is terrifying.” (Participant 1)
2. Bearing Witness to a Constrained Childhood
1) Balancing developmental needs and safety
As children with tracheostomies grow and begin to reach developmental milestones—such as rolling over, crawling, or attempting to sit—participants described entering a new dimension of emotional struggle. Although mothers expressed concerns across all areas of development, including cognitive and linguistic abilities, they were particularly worried about the dangers associated with their children becoming physically active. The increased mobility posed greater risk to the stability and safety of tracheostomy, requiring constant supervision and responses to unexpected situations. Participants reported feeling increasingly anxious and needing to stay constantly alert as their children gained more independence in movement while relying on life-sustaining equipment.
“When he started rolling onto his belly, he couldn’t always hold up his head and would drop forward. The filter attached to tracheostomy tube could hit the surface below and get stuck, making it hard to remove quickly in an emergency. I was constantly on edge, worried something would go wrong.” (Participant 4)
Balancing developmental needs with safety was a persistent concern. Mothers also struggled with the tension between allowing their children to explore and maintaining safety. Because of the risk of injury or accidental decannulation, participants had to limit activities that would otherwise promote play, social interaction, and age-appropriate development. This need for vigilance restricted the children’s participation in peer engagements and natural learning experiences.
“We stop him from playing with toys that could block the tracheostomy tube. Even when he wants to play with other kids, we hold him back because they don’t know how to interact safely with him.” (Participant 8)
2) Tracheostomy as a barrier to accessing inclusive childcare
Participants described how regulatory restrictions limited access to childcare for infants and toddlers with tracheostomies. Although some children with tracheostomies were cognitively ready to benefit from group learning, they were excluded from such experience due to medical needs. Mothers expressed particular frustration that routine caregiving tasks they performed daily at home were classified as medical acts within institutional settings, restricting childcare enrollment.
“It’s frustrating that I can’t send my son to childcare. Suctioning is considered as a medical procedure, so the staffs at daycare aren’t allowed to do it. Even though he is cognitively capable, they won’t allow him to attend.” (Participant 4)
A similar lack of accommodation was also observed in home-based childcare. Some mothers expressed deep frustration with systems that failed to recognize how caregiving and medical procedures are intertwined for young children with tracheostomies. Existing services often excluded essential tasks, leaving families without adequate support.
“We were matched with a sitter for children with disabilities by the local welfare center. However, it was made clear that we couldn’t ask her to perform activities like suctioning as they were classified as medical procedures. But for our son, daily caregiving is inseparable from medical care. It was incredibly frustrating.” (Participant 2)
Several participants also brought attention to the possible developmental consequences of being excluded from group learning. Even when they recognized the value of peer interaction for cognitive and social growth, mothers were unable to secure suitable environments due to medical and logistical constraints.
“We have a play teacher who visits our home, and she says group lessons would be really beneficial to my son—he could learn a lot more by watching and imitating others. … I agree, but making it happen is impossible.” (Participant 9)
3. Drifting Apart through Caregiving Strain
1) Enduring social and emotional toll of caregiving
At home, many participants described a profound sense of emotional isolation. This was often fueled by a perceived inability to relate to other parents whose caregiving responsibilities were far less demanding. For some, efforts to connect with people around them only deepened feelings of alienation, as differences in daily lives became too difficult to bridge.
“I’ve become increasingly isolated because I can’t relate to other moms with kids the same age. I’ve tried reaching out, but our situations are so different that it just adds stress. … Even my close friends don’t really understand, so I distance myself.” (Participant 4)
Over time, caring for a young child with tracheostomy—especially under public scrutiny in a society that values conformity and stigmatizes visible illness—began to affect the mothers’ emotional well-being. Several participants described heightened sensitivity to public attention and social judgment, particularly in everyday settings, which often led them to withdraw from social interactions.
“The way others reacted was so overwhelming it changed me—I became overly sensitive and constantly on edge. It felt like everyone was staring whenever the ventilator alarm went off or my child made coughing noise through tracheostomy tube in public. I’d irritably cover the stroller trying to hide my son, and lash out at others.” (Participant 5)
In response to the psychological burden, participants emphasized the importance of interpersonal support and opportunities to speak freely and feel truly understood. For many, the rare moments of open conversation with others played a crucial role in helping them cope with the emotional demands of caregiving.
“When they suspected something was wrong with my baby, we were referred to the palliative care team. … At first, I didn’t quite understand the purpose, but now I feel like they’re there to support parents emotionally. I can talk to them in ways that I can’t with anyone else, and it made a huge difference.” (Participant 10)
2) Heightened family tensions under caregiving stress
Participants explained that tracheostomy care at home required the coordinated efforts of multiple family members, especially in the absence of consistent professional support. As a result, the burden of caregiving extended beyond the primary caregiver, affecting the entire family.
“In the beginning, my mom, mother-in-law, and I took turns caring for the baby around the clock. I couldn’t take extended leave … so now they come over every day to care for my child while I’m at work.” (Participant 4)
Even when family members contributed, mothers often assumed primary responsibility for both hands-on care and the coordination of medical and daily needs. Despite increasing flexibility in gender roles in South Korea, traditional patriarchal norms continue to frame caregiving as a maternal duty. Participants described that this unequal division of labor, reinforced by cultural expectations of maternal sacrifice, led their caregiving efforts to be taken for granted. For some mothers, the resulting strain also weighed on their marriages, as exhaustion and loss of emotional intimacy created distance and tension between spouses.
“I ended up taking on most of the responsibilities and it’s not just the hands-on caregiving. I’m also the one researching hospitals, figuring out where to buy supplies at a better price… a lot of things fall just on me.” (Participant 1)
“Cooperation between spouses is crucial, but stress and exhaustion often trigger hurtful arguments. I’ve seriously thought about leaving my husband and sometimes wonder if we’d even be fighting like this if our child weren’t ill.” (Participant 6)
Participants also expressed profound guilt over how the intense demands of caregiving impacted their other children. Because so much time and attention were devoted to the child with tracheostomy, siblings often received less parental care and support. Mothers described this imbalance as a painful source of conflict, worrying that siblings might feel neglected or less valued within the family. The concerns were not limited to personal guilt, as mothers also felt the weight of external and societal expectations that pressure siblings to act more mature than their actual age.
“I feel a deep sense of guilt toward my other child because he inevitably gets less attention, no matter how hard I try. People also expect him to act more mature because of our situation—although I don’t ask that of him, it still troubles me.” (Participant 5)
4. Learning to Carry the Weight Alone and Together
1) Building competence through trial and error
Participants shared that confidence in tracheostomy care at home rarely came from caregiver education alone. Instead, it developed through lived experiences—particularly after managing high-stress, life-threatening situations. These moments, while deeply stressful, served as turning points in their caregiving journey.
“I started to feel more confident after facing intense situations—like when my child turned blue during tracheostomy tube change or struggled to breathe during sleep. Going through those moments helped me feel more capable in caregiving.” (Participant 3)
Beyond responding to crises, mothers described how their confidence was built through everyday caregiving—repetition, persistence, and learning from trial and error. Gradually, mothers tailored care at home to the specific needs of their child, refining caregiving abilities in ways that formal guidance could not.
“Over time, I’ve learned what works best for my child. A thinner suction catheter is more comfortable for him, so I still use it when there’s less mucus, even with a larger tracheostomy tube. It’s been a process of trial and error.” (Participant 4)
As their caregiving experience deepened, many mothers came to see themselves as experts in their child’s care. This growing sense of competence was reinforced when healthcare professionals acknowledged their comprehensive knowledge and familiarity with their child’s unique needs.
“Eventually, moms really do become the experts. During hospital stays, nurses rarely need to step in for tracheostomy care with moms at the bedside—they usually just ask what we need because they know we’ve got it handled.” (Participant 10)
2) Finding strength in online companionship
Participants underscored the essential role of peer support as a key resource in navigating daily challenges of tracheostomy care at home. With formal guidance limited or lacking in practical detail, many caregivers turned to online platforms and social media to seek advice from others with the same experience.
“Searching online and reading about how others manage tracheostomy care at home has been really helpful. … These parents share information with such care and detail, because they understand how overwhelming the situation can be.” (Participant 6)
Several participants described how online platforms provided immediate access to real-life insights that were difficult to find through professionals. Guidance from other parents—whether related to equipment, supplies, or daily caregiving routines—was valued for being both practical and empathetic, as it was grounded in lived experience.
“Now I can search social media and connect with other parents caring for a child with tracheostomy. I’ve asked about care routines, supplies, and where to buy them, and they’ve responded with detailed, thoughtful advice.” (Participant 4)
The peer-led online platforms played a critical role in bridging the gap between clinical knowledge and real-world caregiving. Beyond serving as channels for information exchange, these communities functioned as virtual spaces that fostered a sense of solidarity rooted in shared experience. Experienced caregivers took on mentoring roles, offering hands-on direction and emotional reassurance to those just beginning their journey of tracheostomy care.
“There’s an online community for parents of children with tracheostomies where we share information … We also rely on similar platforms for support, since we’ve all been through a same situation. Experienced parents are especially helpful, offering practical advice to those just starting.” (Participant 3)
DISCUSSION
The findings of this study offer valuable insights into the lived realities of mothers caring for infants and toddlers with tracheostomies at home in South Korea. Caregiving extended beyond the execution of routine medical tasks and was shaped by intersecting structural, developmental, and relational factors that influenced how mothers adapted over time. Mothers navigated caregiving within a healthcare and social support context marked by ongoing constraints, while simultaneously responding to their children’s evolving needs and their own roles as primary caregivers. By examining these experiences in the context of South Korea, this study illustrates how mothers perceive and confront ongoing challenges while developing practical and emotionally responsive coping strategies to manage the complexities of tracheostomy care at home.
A key issue identified in this study was the inadequacy of transitional care, which imposed a dual burden of insufficient caregiver education and fragmented post-discharge support. Participants described the discharge preparation as rushed, inconsistent, and lacking in meaningful hands-on training—challenges that were particularly pronounced in rural hospitals where resources and training opportunities were limited. These shortcomings left mothers feeling anxious and uncertain, undermining their confidence and increasing the risk of rehospitalization. Such finding is consistent with previous studies demonstrating the adverse effects of deficient caregiver education and discharge preparation [
9]. Once at home, mothers found themselves navigating poorly coordinated healthcare and social service systems, having to advocate persistently for even the most basic forms of support. Collectively, these circumstances reveal critical systemic gaps in preparing and supporting caregivers of young children with tracheostomies, and underscore the need for standardized, competency-based discharge education with supervised hands-on practice and structured hospital-to-community care pathways to support safer transitions from hospital to home [
25].
The realities of daily caregiving after discharge were further intensified by economic pressure, which emerged as one of the most persistent and overwhelming difficulties. The high costs of complex care, combined with the lack of structured financial guidance, left mothers feeling particularly vulnerable. Participants reported substantial out-of-pocket spending on equipment, supplies, and frequent hospital visits, learning about cost-saving options or partial coverage only after significant expenses had already been incurred. Many attributed this to inadequate communication and limited guidance from healthcare professionals. The ongoing need to secure life-sustaining items—such as suction catheters, humidification devices, and replacement tubes—added a continual layer of stress. These pressures were magnified in situations like COVID-19, where supplies became unavailable, leaving mothers deeply anxious about the survival of their children. These findings reinforce international evidence that financial strain and supply shortages are not merely material burdens but also profound sources of emotional distress [
15].
Beyond financial concerns within the households, participants also encountered systemic and policy-level barriers that further restricted their ability to secure appropriate care. Limited insurance coverage, insufficient information, and fragmented service structures forced mothers to assume the role of care coordinators. Most of them were left to independently locate suppliers, negotiate costs, and apply repeatedly for economic support. These difficulties reflect patterns observed in other high-cost home care contexts [
26]. Based on these findings, relevant forms of support may include coordinated case management to assist families with service navigation, clearer financial guidance, and standardized insurance coverage for essential supplies. Assigning case managers at the point of discharge could provide caregivers with clear and timely guidance on accessing home nursing services, securing financial assistance, and obtaining necessary equipment [
27]. In addition, regulatory changes to classify tracheostomy-related supplies as essential and to standardize insurance coverage and pricing, would help reduce inequities and caregiver burden [
10].
Furthermore, the impact of systemic barriers extended beyond practical caregiving challenges to affect mothers’ emotional and relational well-being. Participants described profound feelings of isolation—both from society at large and from other parents who could not fully relate to the demands of tracheostomy care—reflecting patterns documented in previous research [
15]. Within the sociocultural context of South Korea, the visibility of medical devices often drew unwanted attention, reinforcing stigma and leaving mothers feeling exposed and contributing to social withdrawal. Cultural expectations of maternal devotion further intensified these experiences, as mothers’ primary caregiver role and responsibilities were often legitimized rather than acknowledged. In line with earlier findings, the unequal division of labor within families placed a significant burden on mothers, leading to marital strain and feelings of guilt toward siblings who received less attention [
28]. This imbalance suggests the importance of developing shared caregiving frameworks and integrated psychosocial supports such as counseling, family-based interventions, and structured peer-support, to better address caregivers’ vulnerabilities while promoting healthier family relationships [
29].
While mothers faced multiple challenges in caregiving, infants and toddlers with tracheostomies also encountered developmental and social barriers. Aside from the commonly reported delays in development, participants shared the emotional toll of constantly weighing developmental opportunities against safety risks as their children became more active. The relentless supervision often restricted play, peer interaction, and age-appropriate exploration. The difficulties were not confined to the home environment, as children were excluded from childcare services regardless of their cognitive readiness. Such exclusion is consistent with international findings that young children with special healthcare needs are frequently denied access to inclusive childcare [
30]. In the systemic context of South Korea, mothers attributed these barriers to regulatory distinction between medical and caregiving roles. Participants reported that childcare staff are legally prohibited from performing routine tracheostomy-related tasks such as suctioning, which are classified as medical procedures restricted to healthcare professionals. Additionally, mothers voiced concern that exclusion from childcare would exacerbate developmental delays and social isolation in their children. Addressing these barriers may require adjustments that allow trained staff or on-site nurses to safely perform necessary tracheostomy care, thereby promoting developmental and social growth in young children with tracheostomies [
31].
In response to these challenges, mothers sought ways to strengthen their caregiving competence through lived experience and peer support. With formal caregiver education limited or lacking in practical detail, many participants explained that their confidence developed not through formal instruction but via experiential learning—managing emergencies, navigating daily routines, and refining essential techniques through trial and error. Peer networks, particularly online communities, played a complementary role by providing practical guidance and mentorship. Within these interactions, mothers gradually expanded their caregiving knowledge and skills, tailoring home care to meet their child’s specific needs. Participants also noted the importance of online peer connections as a source of emotional reassurance, empowering them to cope with the ongoing demands of tracheostomy care. This finding supports prior studies that demonstrated the role of peer networks in fostering emotional resilience among caregivers [
25,
28]. The combination of embodied knowledge and shared support enhanced mothers’ adaptability and resilience in navigating caregiving challenges. Although these coping strategies did not completely eliminate perceived caregiving burden, they mitigated the impact by fostering a sense of solidarity and caregivers’ confidence. Integrating experiential learning opportunities and structured peer-support into formal caregiver education, discharge planning, and follow-up services may further improve caregivers’ capacity to adapt and sustain caregiving over time.
Although this study provides valuable insights into the realities of home care for infants and toddlers with tracheostomies in South Korea, several limitations should be considered when interpreting the findings. First, the small sample size (N=10) and the participation of only mothers may limit the range of captured caregiving experiences and the transferability of the findings, as the results primarily reflect maternal perspectives. Second, recruitment through online communities and social media may have introduced selection bias, favoring those with greater digital access or a higher willingness to share their experiences publicly. Third, detailed information on participants’ residential area and socioeconomic status were not collected, limiting contextual interpretation. Finally, the potential influence of differences in respiratory support methods as well as underlying medical conditions on caregiving experiences were not systematically examined. Future studies should include larger and more diverse samples, including fathers and other caregivers, to reflect a broader range of caregiving experiences. Using varied recruitment strategies beyond online platforms may help reduce selection bias. Furthermore, collecting detailed contextual information and examining possible differences in caregiving experiences across different respiratory support methods and medical conditions would further strengthen the understanding of home caregiving for infants and toddlers with tracheostomies.
CONCLUSION
This study explores the complex realities of home care for young children with tracheostomies in South Korea, revealing how caregiving experiences are shaped by the interaction of overall demands with sociocultural and systemic contexts. Mothers described persistent challenges, including insufficient discharge preparation, fragmented support systems, inequitable financial resources, restricted developmental opportunities, and psychosocial isolation. While many of these challenges have been noted in prior research, our findings suggest that their impacts were experienced in contextually distinct ways within South Korea. In particular, cultural expectations of maternal role placed primary caregiving and care-coordination responsibilities on mothers, whose efforts were often overlooked or underappreciated within families. Social stigma associated with visible illness contributed to withdrawal and isolation, while rigid systemic boundaries enforcing a strict division between medical and caregiving tasks limited access to inclusive childcare. Despite these constraints, mothers demonstrated resilience by developing caregiving competence through lived experience and online peer networks, compensating for gaps in formal support systems. This reliance on informal coping strategies points to the need for practice and policy-level responses attuned to South Korea’s sociocultural and healthcare context. Continued efforts should focus on reducing caregiving burden through standardized discharge education, coordinated transitional care, equitable coverage of essential supplies, inclusive childcare with trained staff or on-site nurses, and integrated psychosocial support.
ARTICLE INFORMATION
Table 1.General characteristics of the participants (N=10)
|
ID |
Mothers |
Children |
|
Age (yr) |
Employment status |
Duration of tracheostomy care at home (mo) |
Primary support resources |
Age (mo) |
Underlying condition |
Method of respiratory support |
Time since tracheostomy placement (mo) |
|
1 |
25 |
Leave of absence |
4.5 |
Extended family |
9 |
Airway anomaly |
HMV |
5 |
|
2 |
35 |
No |
9 |
None |
36 |
Neurological condition |
HMV |
10 |
|
3 |
33 |
No |
5 |
Extended family |
11 |
Airway anomaly |
HME |
6 |
|
4 |
31 |
Yes |
20 |
Extended family |
24 |
Airway anomaly |
HME |
20 |
|
5 |
27 |
Yes |
28 |
None |
36 |
Airway anomaly |
HME |
30 |
|
6 |
38 |
Leave of absence |
5 |
None |
8 |
Neurological condition |
OC |
6 |
|
7 |
36 |
Leave of absence |
3 |
Extended family |
12 |
Airway anomaly |
HME |
6 |
|
8 |
34 |
Leave of absence |
5 |
None |
8 |
Airway anomaly |
HME |
5 |
|
9 |
30 |
Yes |
19 |
Extended family |
24 |
Airway anomaly |
HME |
20 |
|
10 |
35 |
Leave of absence |
18 |
None |
21 |
Airway anomaly |
HME |
20 |
Table 2.Semi-structured interview guide for caregivers of tracheostomized infants and toddlers
|
Category |
Key questions |
|
Background and daily life |
• Could you describe your typical day of caregiving at home? |
|
• What was your experience like before and after your child’s tracheostomy, especially during the transition from hospital to home? |
|
Challenges and concerns |
• Since your child’s tracheostomy, what challenges have you encountered in caring for them at home? |
|
• Looking ahead, what concerns do you have about continuing care in the future? |
|
Education and professional support |
• What education or training did you receive on tracheostomy care before your child was discharged from the hospital? |
|
• After discharge, have you received any professional support at home? (e.g., home visits from nurses or other healthcare providers) |
|
Family and social support |
• What kinds of support have you received from family, community, or other social resources in terms of caregiving? |
|
• How do you usually go about seeking or asking for help when it is needed? |
|
Coping and motivation |
• What has been the most difficult part about adapting to tracheostomy care at home, and how did you handle it? |
|
• What has helped or motivated you in continuing your caregiving role? |
Table 3.Themes and sub-themes from the interviews
|
Themes |
Sub-themes |
|
1. Navigating the demands of home care |
1.1 Entering home care without adequate preparation |
|
1.2 Feeling overwhelmed amid insufficient support |
|
1.3 Ongoing challenges with securing the essentials |
|
2. Bearing witness to a constrained childhood |
2.1 Balancing developmental needs and safety |
|
2.2 Tracheostomy as a barrier to accessing inclusive childcare |
|
3. Drifting apart through caregiving strain |
3.1 Enduring social and emotional toll of caregiving |
|
3.2 Heightened family tensions under caregiving stress |
|
4. Learning to carry the weight alone and together |
4.1 Building competence through trial and error |
|
4.2 Finding strength in online companionship |
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